Pfizer, Sickle Cell Group Seek Government’s Support

By Modupe Gbadeyanka

Government has been urged to give more support to treatment, management and control of sickle cell disease in Nigeria.

This plea was made by the Sickle cell Support Society of Nigeria (SCSSN) and a leading pharmaceutical firm, Pfizer.

Speaking at a conference organised by SCSSN in support of Pfizer in Enugu last week, Professor of Hematology at the Muhumbili University of Tanzania, Lucio Luzzatto, who was the keynote speaker, echoed sentiments shared by others that government must pass a bill on sickle cell control and management to better insure the life of the people living with the disease.

On his part, Medical Director of Pfizer, Dr Kodjo Soroh, submitted that the high death rate of sickle cell disorder can be prevented through proper management and increased disease awareness programmes in rural areas.

He said there is no way government can better manage the situation without making policies that will guarantee treatment for people with the disease.

The Medical Director stressed that Pfizer will continue to support activities on how policies can be improved to adequately impact on Sickle cell patients.

According to a Professor of Paediatric Haematology and Chainman, Sickle Cell Support Society of Nigeria, Professor Adekunle Adekile, government need to be fully involved in order to reduce the burden of the disease in the communities.

He also identified poor leadership on the part of the government as being responsible for the snail paced action against Sickle Cell in Nigeria and called on the National Assembly to revisit the Sickle Cell Act brought before the house four years ago with a view to passing it.

“The chunk of the problem lies on the Government because over the years, they have paid lip service to Sickle Cell Disease control and management.

“Government should make policies on SCD a serious one so that life of patients can be insured. The National Assembly should revisit and possibly pass the Sickle Cell Act to ensure that people with the disease are covered”, he said.

According to Prof Adekile, Sickle Cell is a disease that is common all over the world, particularly in Nigeria which has the largest burden with a total number of 1,500 children born every year with the disease.

Prof Adekile said that the problem of Sickle cell is pervasive and many of the patients live in the rural areas, pointing out that the care in the tertiary or secondary centres are not enough.

He regretted that the government has not paid adequate attention to tackling Sickle Cell Disease noting that the disease cannot be controlled until a comprehensive National policy for the Control and management of the patients is introduced.

On her part, the Director, Corporate Affairs Pfizer for Sub-Saharan Africa, said the community networking is critical to achieving the aim of reducing the burden of Sickle Cell in our communities. She noted that Sickle Cell is not a death sentence even as she advised parents to always identify with organisations that are committed to tackling the scourge.

Also speaking during the conference, the Director, Comprehensive Sickle Cell Centre in Ghana, Professor Kwaku Frempong said that most people who are born with Sickle Cell disease in Africa are not diagnosed and many of them die as children. He observed that Government are not aware of the impact of SCD on childhood mortality while noting that there is no country in the whole of Africa that has programmes for new born screening.

“Our Government must step up measures and provide some supplements so that people can be treated as the medical cost is usually beyond what people can manage,” he said.

The Marketing Officer of Assene-Laborex Limited, a subsidiary of Biomedomics, Pharm Santos Onuigbo, charged young people to know their genotype early enough before going into marriage, adding that the company is committed to ensuring that people get the awareness about their state and better treatment against the disease.

He maintained that the company is partnering with Non-Governmental Organizations to get maximum grassroots mobilisation against the disease.

A participant at the conference, Miss Grace Ocheigo, a student participant from Obafemi Awolowo University, OAU was all praise to SCSSN for another opportunity to interact and meet people that would have cost much to meet were it not for the meeting. The student participant said the student have a greater role to play in curbing the burden of the disease.

“I want stakeholders to use students in the campaign to reduce the burden of the disease in the country because they are more vibrant and are closer to SCD patients that are older people.

“Young people relate more their problems to their peers and when these students are speaking it will have more effects because youths are naturally keen to listen to their mates on an issue. By so doing, they open up, the students will then know how to follow them up” she said.

She appealed to the Government and the NGOs to make screening materials available to medical students so that they can be fully engaged in the process in as much as grassroots mobilisation is concerned.

Other participants at the conference praised the meeting and said it gave them the opportunity to ask questions pertaining to clinical practice which were answered by seasoned practitioners.

They also said the meeting enabled them to network and be involved in collaborative research into new trends in Sickle Cell disease.

Sickle Cell is a disease that is not as popular as malaria, tuberculosis and AIDS, but tons of babies born each year around the World inherit the disorder according to reports.

The disease is got by inheriting two copies of a defective gene from each patient. In the process, the red blood cell gets collapsed, forming a crescent moon-like shape, which make it difficult for oxygen to be transported to all parts of the body.

The conference drew participants, stakeholders, partners and sponsors from different part of the world.

The programme, themed ‘Reducing the burden of Sickle cell disease in our communities,’ was anchored on raising awareness for Sickle cell disease, increasing the understanding of the disease among the communities health workers, to review the activities of the society since the last one held was two years ago, with a view to hearing from SCSSN members who were sponsored on scholarship to pursue their post-graduate degrees in Brazil, to outline research and training priorities, update current level of knowledge about the different aspects of the pathophysiology and management of Sickle cell and to hold a meeting of the West African Sickle Cell Network, high Nigeria is a host country.

The 3-day conference was kicked off with a pre- conference workshop with community health workers in the State.